II. The Basis for African American Distrust

African Americans' distrust of the health care system is built out of a history that includes experimentation, the Sickle Cell Screening Initiative, Family Planning/Involuntary Sterilization, and the participation of the medical system in the justification of racism and discrimination in society.

A. Experimentation and Teaching Materials

The distrust of the American health care system is grounded in the knowledge that the health care system has been built on bodies of African Americans. For instance, the nineteenth century marked the rise of modern U.S. medicine. The advances in medicine were legion:

Advances in basic sciences such as pathology, histology, physiology and pharmacology; the introduction of the statistics and the numerical methods which forever changed the nature and scope of clinical medicine and public health; the clinical acceptance of vaccination for smallpox; introduction of the stethoscope; . . . controlling puerperal fever; rapid advances in clinical schools . . . laboratory medicine . . . and publication of Percival's CODE OF MEDICAL ETHICS.

However, during the same period the American health care system *196 evidenced a lack of attachment to esoteric research and pure science that resulted in American physicians performing bold, occasionally brilliant, clinical medical feats which were not being performed anywhere else on earth. Then and today it seems to be of little importance that those bold, occasionally brilliant . . . medical feats occurred on Blacks and the poor. Understanding the extent of the experimentation is important for understanding the basis of the distrust of African Americans. Slaves served both as instructional material for teaching medical students and as a source of entertainment at medical conventions. For instance, enslaved albinos and Siamese twins were often displayed at medical society meetings as freaks and sports. 1. Experimentation During Slavery

In the 1800s, Dr. McDowell successfully performed the removal of an ovarian tumor, a dangerous and radical surgery which he perfected on slaves. In 1800, hundreds of slaves, including two hundred slaves of Thomas Jefferson, were inoculated with smallpox to test the safety of a new vaccine. Dr. Crawford Long, probably the first physician to use ether agent as a general anesthetic, conducted a large percentage of his early experiments on slaves. To determine which medication would allow a person to withstand high temperatures, Dr. Thomas Hamilton placed slaves in an open-pit oven which was constructed to contain heat with only the slaves' heads above *197 ground. Dr. Walter F. Jones used a group of slaves to test a remedy for typhoid pneumonia which involved pouring five gallons of boiling water on the spinal column. Slaves actually suspected physicians of killing slaves or letting them die for purposes of dissection. While these rumors were never documented, slaves' bodies were dug up and sold to medical schools. Dr. Alexander Somervail, after accidentally discovering how to relieve the suppression of urine, tested his theory on other Black patients. Robert Jennings is credited with the development of a successful vaccination against typhoid infection that resulted from his successful experimentation on thirty slaves and free Blacks. Dr. P.C. Spencer, who gained notoriety with his discovery of an efficient and relatively safe technique for treating painful bladder stones, perfected his technique by performing the painful experimental surgery on slaves. Dr. Marion Sims--considered the father of gynecological surgery--perfected the techniques for gynecological surgery on slaves. He addicted the women to narcotics in order to sedate and immobilize them post-operatively. Furthermore, he performed the surgery repeatedly on the same women. Though the social norms have changed dramatically, Sims is still revered as a hero and an icon; the complete picture of him as a person who abused and exploited slaves is usually never portrayed.

2. Post-slavery Experimentation

The most well known post-slavery experiment is the Tuskegee Syphilis *198 Experiment which the United States engineered from 1932 through 1972. The Tuskegee Experiment involved four hundred African American men in a government-sponsored study to research the effects of untreated syphilis. While the men were not deliberately exposed to syphilis, as some rumors maintained, they were never told that they were not being treated or that effective treatment was available. Furthermore, even though the experiment was regularly reported over the course of the forty years, there was no outcry from the medical establishment. The effects of the Tuskegee Syphilis Experiment of maintaining and strengthening the distrust in the health care system can not be underestimated. The Tuskegee study served to reinforce the belief in the African American community that the distrust of the medical system was not merely an historical issue.

The Tuskegee Syphilis Experiment is not the only evidence of post-slavery abuse. In 1963, the United States Public Health Service, the American Cancer Society, and the Jewish Chronic Disease Hospital of Brooklyn, New York, participated in an experiment in which three physicians injected live cancer cells into twenty-two chronically ill and debilitated African American patients. The patients did not consent, nor were they aware that they were being injected with these cells. In 1972, twenty women, primarily poor, young, and Black, were bused from Chicago to Philadelphia to receive *199 abortions in an outpatient clinic where a new experimental medical device, called the Super Coil, was being used to induce the abortion. A complication of using Super Coil was uncontrollable bleeding that would eventually lead to shock and would require a total abdominal hysterectomy. During the 1970s, the government collected blood samples from seven thousand Black youths. Parents were told that their children were being tested for anemia, but instead, the government was looking for signs that the children were genetically predisposed to criminal activity. A similar experiment was performed on six thousand young men--approximately 85 percent of whom were Black--housed in Maryland state institutions for abandoned or delinquent children. The children's confidentiality was not protected and the blood-test results were passed to the courts to use as they saw fit. At least eighty-two charity patients were exposed to full-body radiation at the University of Cincinnati Medical Center. The patients were exposed to radiation ten times the level believed to be safe at the time; twenty-five patients died. Three-quarters of the patients in the study were Black men and women. The consent signatures were forged. Many women of color have been sterilized without their informed consent so that medical residents could gain additional experience in performing tubal ligations and hysterectomies.

3. Prison and Military Abuse

One area of significant post-slavery abuse has been the experimentation that has occurred in prisons. Because African Americans make up forty-four percent of all prisoners--almost four times our proportion in the general population-- we are overrepresented in any prison abuse. In 1962, at least 396 inmates at the Ohio State Prison were injected with live cancer cells so *200 researchers could study the progression of the disease. Between 1963 and 1971, radioactive thymidine, a genetic compound, was injected into the testicles of more than one hundred prisoners at the Oregon State Penitentiary to see whether the rate of sperm production was affected by exposure to steroidal hormones. Throughout Alabama between 1967 and 1969, inmates were used in flawed blood plasma trials. The study was managed by Dr. Austin R. Stough at Kilby, Draper, and McAlester prisons. There was no informed consent, and no accurate records were kept. At a California medical facility between 1967 and 1968, prisoners were paralyzed with succinylcholine, a neuromuscular compound. Because their breathing capacity was shut down, many likened the experience to drowning. When five of the sixty-four prisoners refused to participate in the experiment, the institution's special treatment board gave permission for prisoners to be injected against their will. In 1990, 1.7 million soldiers--twenty-two percent of whom were Black--were forced to take experimental vaccines under federal law. The law stipulates that soldiers cannot refuse to participate in the government's medical experiments.

The above instances of slavery and post-slavery abuses are cited not because they are the only instances of experimentation and abuse of African Americans, but because they are some of the most famous. While many Blacks may not be able to give you the details of the experimentation and abuse, the instances are a part of the collective Black consciousness which still influence African Americans' reaction to the health care system.

B. Sickle-Cell Screening

The debacle of sickle-cell screening in the 1970s also increased the distrust of the medical system, as did medical experimentation. Although sickle-cell disease has been described since 1910, it did not become a priority for federal *201 or private funding until the 1970s. In the 1970s, large scale screening was undertaken with the goal of changing African American mating behavior. Unfortunately, the initiative promoted confusion regarding the difference between carriers and those with the disease. This confusion resulted in widespread discrimination against African Americans. Some states passed legislation requiring all African American children entering school to be screened for the sickle-cell trait, even though there was no treatment or cure for the sickle-cell disease. Some states required prisoners to be tested, even though there would be no opportunity for them to pass on the trait. Job and insurance discrimination were both real and attempted. The military considered banning all African Americans from the armed services. African American airline stewardesses were fired. Insurance rates went up for carriers. Some companies refused to insure carriers. During that period, many African Americans came to believe that the sickle-cell screening initiative was merely a disguised genocide attempt, since often the only advice given to African Americans with the trait was, Don't have kids.

*202 C. Family Planning and Involuntary Sterilization

Family planning initiatives have been described as another attempt to reduce the Black population. This view is not without credibility. The fact is that the historical roots of family planning and birth control have been centered in controlling the population growth of African Americans. Margaret Sanger, considered the mother of family planning and reproductive freedom, supported and promoted the use of reproductive technology to diminish the reproductive liberty of African Americans.

We do not want word to go out that we want to exterminate the Negro population and the [Negro] minister is the man who can straighten out that idea if it ever occurs to any of their more rebellious members.

Throughout United States history, family planning and birth control have been used to limit the population size of African Americans. In the 1930s, the government funded the first birth control clinics as a way of lowering the Black birthrate: In 1939, the Birth Control Federation of America planned a Negro Project designed to limit reproduction by blacks who still breed carelessly and disastrously, with the result that the increase among Negroes, even more than among whites, is from that portion of the population least intelligent and fit, and least able to rear children properly.

In fact, the early birth control movement included strong factions advocating *203 eugenics or compulsory sterilization. In the 1960s, the government expanded the subsidization of family planning clinics as a way to reduce the number of persons on welfare. In so doing, the number of clinics were proportional to the number of Blacks and Hispanics in a community.

In the 1970s, some doctors would only deliver babies or perform abortions on pregnant African American women if the women consented to sterilization. Other women were threatened with the withdrawal of their welfare benefits if they did not agree to sterilization. In a case brought by poor teenage African American women in Alabama, a federal district court found that an estimated 100,000 to 150,000 poor women were sterilized annually under federally funded programs. In the 1970s and 1980s, Public Assistance officials tricked African American welfare recipients into having their teenage daughters sterilized.

A 1982 study determined that only twenty-five percent of White women were sterilized, compared to thirty-four percent of African American women. African American women of all marital statuses were more likely than White women to use sterilization as a contraceptive method. Further, African Americans in the South have the highest rates of hysterectomy and tubal ligation in the United States.

Today, some individual doctors encourage African American women to be *204 sterilized because they view the women's family sizes as excessive and believe that they are incapable of using contraceptives. Furthermore, the federal government still subsidizes sterilizations for women eligible for Medicaid coverage, though it will not pay for abortions. Thus, African Americans' distrust of family planning is justified.

D. Participation in Justifying Racism

Louis Agassiz, Samuel George Mortion, Samuel Cartwright, and Josiah Clark were the leading U.S. academic physicians to advocate the theory that Blacks were biologically inferior to Whites. In fact, many physicians used their science to create elaborate theoretical systems to justify the difference in the medical treatment of Blacks and Whites. They advocated for the establishment of uniquely Southern-oriented medical education to address the unique diseases of Black slaves, such as drapetomania--the disease causing negroes to run away. Furthermore, it is important to illustrate that these men did not represent the lunatic fringe. Their ideas were widely held and accepted. For instance, Oliver Wendell Holmes, Dean of Harvard's Medical School from 1847 to 1853, believed in and promoted the scientific value of the work of these scientists. In fact, Holmes held such regard for Samuel Morton's work that he considered Morton's research permanent data for all future students of Ethnology . . . .